Friday, October 10, 2014

The Verdict is In?



I saw my Rheumatologist today and the verdict is in;  I am a hot mess.

They now give you a "Patient Plan" at each visit that outlines everything going on.  Looking at my "plan" is depressing at best.

My "Problem List" reads as follows:

  • Rheumatoid Arthritis
  • Fibromyalgia
  • Degenerative Disc disease
  • Rheumatoid Lung disease
  • Acid Reflux
  • Chronic Fatigue Syndrome

My meds list is now 8 RX's deep- plus a multi, B-12 and Prilosec.

Today's assessment reads:

1- Rheumatoid Arthritis is to the forefront (aka- I am starting to flare)
2- Current use of high risk medications (the Lasix perhaps?)
3-  Abnormal Liver Enzymes
4- Fibromyalgia is also at the forefront.

My weight has spiraled up, up, up since I quit smoking (almost) 10 months ago.  *It's as if my metabolism just died when I gave up on cigarettes and my BMI has ballooned*.  Vital signs are good- up a little but definitely within normal limits.

Current Orders:
- Begin Aquatic Physical Therapy after I return from my **vacation**
- Comprehensive Metabolic Panel
- Quantiferon (R) TB Gold (incubated)

Labs pending:
- C-Reactive Protein
- CBC (includes Diff/PLT)
- Comprehensive Metabolic Panel
-SED Rate by Modified Westeregren

See- Hot mess! Curling up in a ball and sleeping for the next.....5 years (?) sounds like a beautiful thing.  But that's just not possible.

Despite all of that- there are positives in my life.  These are the things I will be focusing on.

- Vacation.  Did I mention Vacation?  My best friend and I are heading to Florida next week for 5 glorious days.  We are meeting at the airport in Orlando, we are spending a couple of days at a resort on Cocoa Beach for a wedding of a dear friend, then moving to Universal Studios.  Sunday we will visit the St. Augustine Lighthouse.  It is reportedly haunted so we are going to do their night tour.  Check it out here.  Monday we are doing Harry Potter.  I know- most people go to Universal Studios to do the whole thing, but not us.  We will do the Wizarding World, Hogwarts Express and Diagon Alley.  We really don't care about the rest.  The goal is to soak up as much of JKR's world as we can.  I am smiling just thinking about it.  I don't care how much  pain I am in, I have given myself days to recover when I come back.  We are doing all of the rides, we are doing all of the steps to the top of the lighthouse.  I will NOT allow my illness(es) hold me back from this once in a lifetime trip.

-Of course, there's my wonderful support system.  I have been very....whiny lately.  I hate whiny but I have just been so exhausted that I don't want to move and they have let me be.  That's the best thing we can do when I am like this. I have to do it, I don't have to like it.  Soon enough, if I keep it up they will give me a much needed kick in the a$$.

-My four-leggers.  A week or so ago, I just couldn't get out of bed.  I tried.  I got up and got ready for work and I was in so much pain, and so exhausted, that I called work and said that I would be a few hours late.  I didn't even change, I just fell back into my bed.  At 10:30 am, I tried to get going again and it just wasn't happening.  So I messaged my assistant manager and asked her to switch closing nights with me.  She agreed and I put my pajamas back on and went back to bed again.  I got up at 5 for a few minutes and 8pm for an hour or so then back to bed.  During this entire day- Auggie stayed in my bed with me.  He refused to move.  He curled up against my leg and stayed there.  The only reason I got out of bed was because he would not move away from me and I knew he HAD to go out and do his business and eat dinner.  Harley-girl is fighting her own arthritis so she lay down on the bottom step and stayed there.  When I came downstairs, she was my shadow.  Both of them offer such comfort.  I only wish I could be the person that deserves and is worthy of such devotion.

- My work.  It's at a place now in the cycle where I can sit to work. No 10-12-14-16 hour days on my feet.  There's a LOT of data entry right now, plus buying decisions, researching titles and emails flying but I don't have to be on my feet for any of it.  That's a relief.

- It's HAUNT season!  If you know me, you know I love, love, love Halloween.  I found my "niche" in the haunted house last year and I am back at it this year.  I can't tell you the joy it brings me.  I am sharing my weekends with a bunch of kids (I have bras older than a lot of them!) who are so creative and so thoughtful and so just excited to be there that I can't help but catch the excitement no matter how tired or sore I am.  They have been good to me too.  They are considerate of my limitations.  They are protective of my costumes and makeup and props and the room I am haunting in.  They even put a fan in there because my costume is so heavy!  Tonight there is a Halloween kick-off Parade.  I have been asked to walk in it but if I don't feel up to it, I can stay at the haunt and hand out candy.  They make me feel valued.  Like I make a true contribution- and I have so much fun doing it.  Everyone should have the opportunity to do this at least once.  :-)

I am sure there is more, but I have to take a nap before I go tonight.  I have a busy, busy, BUSY day tomorrow and won't be home till around 2am so I have to rest up while I am and the pups are both at my knee waiting to nap.

So the verdict for now is- yes, I am a mess physically but there are so many more things to be grateful for that I cannot let this overwhelm me.  We will see where we go with the new PT.  Until then, we take it one day at a time.

Have a lovely day!





3 comments:

Wren said...

Oh, Julie. What a lot of trouble to have to deal with every day! And yet you're still smiling, still finding ways to see the good and beautiful parts of daily living, still keeping that attitude adjusted to the positive side of the dial. I think you're wonderful.

Please know you have a friend who's rooting for you. I hope things will start to resolve soon and that you'll feel strong and healthy--and BE strong and healthy, too. Sending lots of love, calm, courage, and peace your way.

ron said...

Wow I love to see when people are in not the best shape but still are grateful for what they have. I am rooting for those people to show the rest of us the attitude of thankfulness

Frank said...

Your right ron. You should be grateful for what you have. She has a great spirit and may god bless her. Peace be with you